Notes from CureIous' at Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby magoo » Wed Dec 30, 2009 7:28 pm

Congrats on your improved health!!!!!! Your girls must be so happy:)
When my boys tell me I am so much better it's music to my ears!
Have a very happy and energetic new year!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Johnson » Wed Dec 30, 2009 11:18 pm

Hey, Mark, and everyone with the infernal ringing known as tinnitus;

I think that I found this link here, but it is worth reviving - http://www.american-hearing.org/disorders/autoimmune/autoimmune.html.
Talk of tinnitus, balance problems, etc. It is an auto-immune disease of the inner ear.

I have had a screaming, variable, 6-tone tinnitus in my right ear for years. Even the noisiest environment cannot drown it out. I am effectively deaf in that ear otherwise. ENT says it's MS, multiple neurologists say it's ENT. Rinse and repeat.

This is another fascinating article (probably also from here) - http://news.bbc.co.uk/2/hi/health/8268336.stm
Minute organs hidden deep within the ear appear to directly alter blood flow to the brain, scientists have revealed.

Until now, experts thought the inner ear's job was to control balance alone.

But the Harvard Medical School team, working with Nasa, found the balance organs also affect brain blood flow in their study involving 24 people.

I had many years of TMJ dysunction, wisdom teeth problems, a root canal, and a chronic ear infection on the affected side.

Chickens and eggs.

The plot thickens... (for me, anyhow)

magoo wrote:Congrats on your improved health!!!!!! Your girls must be so happy:)
When my boys tell me I am so much better it's music to my ears!
Have a very happy and energetic new year!!!


I look so much forward to being able to be a "real" Da. Some time ago, my then 2.5 year old informed me that it was 'a bug in Da's head that make Da sad". He knows that when I am on the computer, I am trying to 'get the bug out of my head'. It's kind of sad. He is keen on soccer, and dancing, and I look forward to showing him the moves.

Enjoy your kids. They are so beautiful.
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Wed Dec 30, 2009 11:58 pm

CRHInv wrote:Good news Mark! I think I am having very similiar results to yours and I couldn't be happier. I bet you really appreciated that extra energy for all your celebrating. Isn't it amazing how much easier things are now?

Well, yes and no, yes, I had copious amounts of energy to expend playing Bocce ball with the family. No, I should not have expended said energy on muscles that weren't used to tossing around heavy plastic balls. Just now getting over the soreness but what a way to get sore!

I have some tinnitus also. I do think there is more since the procedure, but it is still not enough that I am concerned. I really don't even want to think about it or it might start bugging me!


It only makes sense in my mind, that if the flow causes the hum in the first place, anything that would improve the flow, would increase the hum. I think once I get this bed tilted a bit things will improve, but then again I'm upright most the day anyways and it's still there as a constant. Positively maddening lol. I took my 2 year old in for a hearing test, when I sat in the booth with her, oh boy it was quiet in there. Too quiet.

Luckily, as far as I can tell, it is benign and not indicative of any serious issues, as most tinnitus is not. In the not too distant future, when things die down a bit up North, I'll post up the spot Dr. D wanted to angioplasty for posterity, it's not a stenosis per se, definitely not reflux-worthy, but opening that up just a tad might make the flow more laminar and reduce the hum somewhat. Just my opinion not his. Then again it could have the opposite effect considering the size of the right side, and it's apparent proximity to the inner ear structures. Could make it worse with increased flow.

Imagine that, an MS patient who's chief complaint, is tinnitus, Lord willing at least for now. Sounds like a pretty good deal to me! :)

Happy New Year to you too!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby thisisalex » Thu Dec 31, 2009 6:11 am

CureIous wrote:Just for my own curiousity, I delved back into my MRI from 6/2008. I was interested, after having identified the stenosis/collaterals on the "easy to see" MRV from Stanford, could I in fact find evidence for said same on earlier MRI? Obviously back then nobody was poring over the MRI looking for evidence of vein stenosis.


Hey Mark

It was a good idea to look after the old MRI-s... I started to investigate my old scan (normal brain MRI, 1,5T, poor quality) and tried to identify veins and stuff like that :) ... and I think i have found something...
here is the picture:
yellow is my internal jugular (?) and the green is a stenosis (?)
it is clearly visible, that the axis of the vein is diverted below the stenosis.. or is it just a coincidence...?

Image

looking at the other slices it looks like the stenosis could be a bone, which is visible at other angles also... interesting
i am going to an MRV next week (Hungary) we'll see what is going to be found. I try to make them aware of the Haacke protocol... :)
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Postby ErikaSlovakia » Thu Dec 31, 2009 6:28 am

thisisalex wrote:i am going to an MRV next week (Hungary) we'll see what is going to be found. I try to make them aware of the Haacke protocol... :)


Oh, this is great! Plese let us know after...
Happy new year to Hungary!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby prof8 » Thu Dec 31, 2009 5:07 pm

Hey Mark, glad to know you are feeling better in many ways. Awesome!!
I have a question or two for you and others.
Did all of you have tinnitus before the surgery? Is it an MS symptom or something else? Did anyone not have tinnitus and get it after the surgery? If I understand this correctly it's the sound of the flow of blood that is causing this?
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Postby CureIous » Thu Dec 31, 2009 8:54 pm

prof8 wrote:Hey Mark, glad to know you are feeling better in many ways. Awesome!!
I have a question or two for you and others.
Did all of you have tinnitus before the surgery? Is it an MS symptom or something else? Did anyone not have tinnitus and get it after the surgery? If I understand this correctly it's the sound of the flow of blood that is causing this?


I definitely had this pre-op. That it ebbed and flowed in intensity post op is intriguing to say the least. It's only on the right side and always has been. I'm not sure about the "no tinnitus until op" people or if there even are any. I would loosely compare it with the ringing the champagne glass trick. You know how you can wet a finger, ring the top of a crystal glass and if done correctly it will "hum". Yes it is literally the sound of the flow causing this, but will present differently from person to person. If it's a pulsatile type like Joan's dear one had (from what I recall), it's easier to pick out and eliminate, via pressing down on the jugular in question (to temporarily arrest the flow), and listening via stethoscope. Would advise against trying that at home though lol. That's what the ENT is for. Most the dx stuff can be done pretty quickly, he didn't even want to look at the scans, said it wasn't his specialty to dx MRI's. I'm cool like that...

:) Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby cheerleader » Thu Dec 31, 2009 9:56 pm

prof8 wrote:Hey Mark, glad to know you are feeling better in many ways. Awesome!!
I have a question or two for you and others.
Did all of you have tinnitus before the surgery? Is it an MS symptom or something else? Did anyone not have tinnitus and get it after the surgery? If I understand this correctly it's the sound of the flow of blood that is causing this?


Jeff didn't have tinnitus until his procedure, he still has a slight whoosh sound in his left ear when he lies down at night, called pulsatile tinnitus. His left jug is new, since before it was stented, there were just lots of squiggly collaterals there where the jug should have been. The sound goes with his pulse, and is pretty obviously related to his vein....we figure it's from the stent vibrating with the blood flow. He's gotten used to it, and it's not as loud as it was last month, so he's hopeful it will disappear. Dr. Dake checked it out last month, and the veins and bloodflow looked great, so it's nothing dangerous, just mildly annoying. Jeff's happy to be awake, however...and says it's all been worth it.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Thu Jan 14, 2010 12:39 pm

Hey I found my follow up thread! lol.

Just an FYI, had a fantastic follow up with my neuro this morning, I kept him in the loop from the git go, and he is VERY excited about all this, wanted more info, I gave him the info on the upcoming workshop at McMaster, and he might be going or at least will check into it.
He of course recommended going back on the DMD's, we talked about the vascular immunity connection and as much as I could jam into an office visit. He sees hundreds of MS patients, and I told him he needed to be prepared for every one of them to come in and start asking questions. He agreed that was going to be a future issue and wants to be prepared. I will be putting Dr. D's protocol in his hands to pass on (along of course with Dr. Haacke's).

It went 10x better than what I expected, and was glad to have kept his office in the loop from the git go. Just an encouragement to everyone, that not all neuros are going to be circular-filing this. My hope is, that he will eventually start referring patients for MRV's or at least drop some hints, since eventually most if not all of his patients are going to walk in and start asking questions. He knows what is coming and wants to be prepared to help his patients.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Sharon » Thu Jan 14, 2010 1:13 pm

Mark wrote:

It went 10x better than what I expected, and was glad to have kept his office in the loop from the git go. Just an encouragement to everyone, that not all neuros are going to be circular-filing this


Glad to hear the check-up was positive. I go see my neuro next week -- like you, I have kept him in the loop the entire time. And, because he is familiar with CCSVI he is responding to his patients more positively. He is not writing scripts, but he is not discouraging the theory either.

Sharon
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Postby CRHInv » Thu Jan 14, 2010 3:25 pm

Mark, Sharon - Are you guys on any DMD's or going to start them back up? I am going to have to make this decision and I am just wondering what you guys think.
Thanks!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Sharon » Thu Jan 14, 2010 3:53 pm

Hi Beth!

I have never taken any DMD's and I do not plan on taking any. MRI's haven't shown active inflammation since my diagnosis, so there was no reason to take them. I did start back on the LDN after my two month follow-up.

Sharon
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Postby CRHInv » Thu Jan 14, 2010 4:00 pm

Thanks Sharon!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby CNClear » Thu Jan 14, 2010 8:49 pm

Hi Beth,

I took Copaxone for 2 years and Avonex for the next 2 and with out a doubt, I wish I had NEVER taken ANY...I have never felt so bad in my life and I continually got worse. I should have stopped them sooner, but my neuro was SO insistent! And he kept telling me that I would get used to them, not to stop them! When I finally refused to continue any longer, he said something to the effect of, "...yeah there is a LOT of people who have such a bad experience, they have to stop. I'm surprised you didn't quit sooner..."

I feel like I had those 4 years stolen from me and I have never felt so bad and never gotten so much worse with lasting effects, as when I took them. My neuro made me feel like I was not doing everything I could to help myself, made me feel really selfish and guilty until I agreed to take the drugs...then when I stopped, it was like, "...can't believe you actually bought all that propaganda..." I was pissed and from my seat in the stands, I will never take the DMDs again...the only thing I would consider is the LDN...

This is not advocating either way...just relating how much I hated the entire experience and sincerely wish I could go back in time and NOT take them...

Just telling my experience...I should have paid more attention to the part where my neuro and all the literature and research I did said that they really don't know how (or IF, IMO) they worked...besides, I still don't understand HOW they can be so confident that it actually does stave off permanent damage...MS is so unpredictable and so different in its course, for each sufferer, that I now find it akin to witchcraft to proport to have any benefit at all...

Never really gave my opinion on this before, but since you asked....

Lisa
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Postby CureIous » Mon Feb 01, 2010 9:00 pm

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Last edited by CureIous on Mon Feb 01, 2010 9:09 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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